Another member of the Club noone wants to join!

Hi and so sorry you needed to find the group!

so sorry I can’t answer the vast majority of your questions, I ‘just’ had a mx with implant and cancer was cleared (hopefully for good, surgeon said I was low risk) but by answering I hope it will keep this towards the top of the page. 

I suspect you will now see an oncologist but maybe not. Your case will certainly be discussed by the whole team (called a multi-disciplinary team or MDT for short) including surgeon, oncologist, radiologist together with the BCN’s, so they will decide between themselves (but discussing it with you too afterwards) what the best possible steps are for you, for follow on treatment. 

I was told that as I was HER- and it was not in my nodes at all, Chemo and radiotherapy were not indicated but as the tumour was positive to oestrogen, my treatment would be oestrogen blocking meds for 5 years. I’m 2 1/2 years into that and all seems ok.

Hugs xxx

Aww thank you for replying - I really appreciate it. This is a whole new world for me! Well, ish - my mum died of non-hodgkin's lymphoma nearly 4 years ago. That's my only connection with cancer - until now. I generally feel positive, but I have my moments... It really is a rollercoaster of emotions isn't it! x 

Hi I've been here for about a month and still full of questions. Had second op this week to take away safe margin following lumpectomy 6 weeks ago which showed DCIS. 

Like you I have another appointment with surgeon on 3rd December to see where we go from here. If he is done I'm over to the oncologist I understand but its a new world for all of us.

Your in the right place for advice and support though.

Debs

Hi and a warm welcome to the club! You've already had an eventful time but, like you have said, still lots of questions. I'll try to answer some but bear in mind that different trusts may do things differently. 

Re timing.... in my case, lumpectomy on 24th Oct; oncology appointment fifth december (sorry my ancient laptop doesn't do certain numbers!); 3 weeks of radiotherapy started 2nd January. So some big gaps. I was anxious re the time between the surgery and the rads (10 weeks?), but in the end was glad to have time to heal. I think the minimum is six weeks. After my oncology appointment I started on anastrozole (hormone therapy) as my beast was ER+, HER2 negative, I think the same as yours? I was desperate to get everything started but the wheels do turn slowly at times. I remember opening an NHS letter, hoping it was my oncology appointment, only to find it was for a year later, for my one year follow up.... I was really disappointed and said to my hubby that I supposed I should be glad that at least they thought I'd still be alive!!! Not really what he was expecting but for me a way of coping with it all I guess!

Re the constants: in my case, I only saw the oncologist twice, once to discuss post op treatment (hormone zappers and rads) and one more time, 10 weeks after rads, to sign me off. It would of course be different if I'd had chemo. The follow ups are done by the surgeon now, yearly appointments a few weeks after my annual mammogram. If I have any queries in the meantime I contact the breast care nurses. So that's been my experience but I'm guessing that yours may be different according to whether chemo is an option or not. 

Totally agree that it's a roller coaster of emotions but you may feel a bit more settled once you know your treatment plan. Horrible limbo stage, waiting for results and further appointments. 

Wishing you well and sending love and a big (but gentle) virtual hug, HFxx

Hmmm, my ‘previous’ with cancer was my Dad who died, (lung) and my big brother who is ok (colon) and daughter again ok (lymphoma) so I’ve had too much in my life, especially our lass whose illness was a very long one! 
Yes, it truly is a rollercoaster of emotions! 
But you’ll get through it, honestly!  Keep posting....

Hugs xxx

I, too, have er+ and the oncologist told me that chemo doesn't work on my type of cancer.  I am due a mastectomy on 3rd December and then, depending on margins, radiotherapy thereafter.  I was told they would normally do chemo beforehand to see if any tumours would shrink,  From my experience so far, your first point of call will be the breast care nurses who are involved in all the Mullti-disciplinary Meetings and are aware of what is happening for each patient.

Hi there

Good name...like it! If I were you I'd contact your BCN as they should be well placed to advise what the next steps are and therefore manage your expectations.  We've all been there on this rather annoying and surprising voyage of cancer treatment discovery so don't think you're alone in the utter confusion and bewilderment.  Its quite sad that quite a lot of us now know the way things work, the jargon, the acronyms...you quickly become an expert.

Based on my experience ( different surgery & order of treatments) your only constant contact is the BCN, I do hope that you have a good one as they can differ quite markedly in abilities, mine was not too bad (I'd give her a 6.5 out of 10) but as have now completed all short term treatments am now under the auspices of the Open Acces Follow Up (OAFU) unit that monitors me until I'm told to bugg4r off at some point in the future I guess.

I hope 2021, that's just around the corner, is less shite for you.

Sam

Thank you everyone for your comments Today has been up and down for me - I’m thinking it’s the come-down from a general anaesthetic 2 days ago (and the second in a month). I was fine, then a dark cloud of loneliness hit. It takes me a while to trust a person, and I feel I’ve just started to trust my surgeon - to the point I feel able to ask questions. The thought of having to start over again with another doctor really wobbles me. I know it’s insignificant in the big theme of things, but today it was a big worry. But tomorrow is another day. Onwards and upwards xxxx

At least IF you need to get used to a different doctor you’ll know that they all meet as a team, and your BCN will be a constant throughout, so a person to forge a good relationship with.

Hugs xxx

Hi Ace Trace. I'm 51 and married, and was diagnosed in January. I had a similar experience except for having a full mastectomy, and not having the bit with the wire and the mammogram - ouch, that sounds painful!

As well as the tumour in my breast, I had a 4mm cancer in the sentinel node, but the other nodes were all clear. I was part of the Optima trial and I'd say if you can get on it, do. For me when the results came back the score was so low (meaning, in the words of my surgeon, that the cancer is not inclined to go wandering off around my body or to come back) that I didn't need chemotherapy and have the reassurance of knowing that the likelihood of reoccurrence is low. Apparently around 1 in 4 of those tested don't need chemo so it's worth giving it a go. They use the tissue they have already removed so all you do is sign the form and then they get on with it. 

Breast nurses are brilliant, and always there for you even after treatment finishes. In my case the consultant surgeon is the senior doc involved to has overall control of your treatment.